11 Things Only Someone With Endometriosis Understands

11 Things Only Someone With Endometriosis Understands

SEPTEMBER 22, 2015 | By SARAH KLEIN

When Michelle Johnson was diagnosed with endometriosis, she thought she had the flu.
 
"Winters here in Chicago are brutal," she says. "So when I found myself very fatigued and lethargic with a bad fever, I thought it was just the weather."
 
She ended up in the ER after the fever hit 104°. After 9 hours of tests for life-threatening concerns like a ruptured appendix, she found out she actually had stage 4 endometriosis. Endometrial growths had gotten so large they were pressing on her kidneys, restricting the flow of urine, which had led to a kidney infection that caused the sky-high fever. She'd been having increasingly heavy and frequent periods, but she thought it was "part of being a woman," she says. It wasn't: "The doctors guessed I had had endometriosis for at least 10 years, unchecked, undiagnosed." She was 33. 

A little endometriosis 101 for the unfamiliar: Cells that typically grow in the lining of the uterus, called the endometrium, can end up in other places, where they really don't belong, says Marc R. Laufer, MD, a Harvard professor, chief of gynecology at Boston Children's Hospital, and the director of the Boston Center for Endometriosis. "Those cells implant in those other locations and cause pain if left untreated or undiagnosed."

That's because they grow—and bleed—as if they were still at home in the uterus. "Every time a woman has a period, there are these micro-periods happening," says Tamer Seckin, MD, a specialist in endometriosis in private practice in New York and the co-founder and medical director of the Endometriosis Foundation of America. The immune system is altered in some way in women with endometriosis so that no matter how much swelling and inflammation the body sends to the pelvic cavity to try to clean away the blood that doesn't belong, the implanted cells are still able to thrive, acting almost like cancer in many ways. Growths on the ovaries, called endometriomas or chocolate cysts, can permanently damage a woman's fertility. Cysts may grow on the bowels, bladder, or, more rarely, even infiltrate the lungs.

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An Interview with Dr. Tamer Seckin, Endo Expert
An Interview with Dr. Tamer Seckin, Endo Expert

​Dr. Tamer Seckin is a New York–based gynecologist and laparoscopic surgeon who specializes in treating endometriosis. He co-founded the Endometriosis Foundation…

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Patient Reviews

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  • Sheena Wright

    I underwent surgery with Dr. Seckin in 2017 and have felt like a new woman ever since. If you have, or suspect you have endometriosis, Dr. Seckin and his compassionate team of surgeons and staff are a must-see.

  • Angela Aro

    I have struggled with endometriosis and adenomyosis since first starting my period at 13. I was diagnosed at 21 and what followed was a series of unsuccessful surgeries and treatments. My case was very aggressive and involved my urinary tract system and my intestines. After exhausting all of my local doctors I was lucky enough to find Dr. Seckin. We…

  • Emi O

    Seckin and Dr. Goldstein changed my life!

  • Kristin Sands

    Like so many women who have tirelessly sought a correct diagnosis and proper, thorough medical treatment for endometriosis, I found myself 26 years into this unwanted journey without clear answers or help from four previous gynecological doctors and two emergency laparoscopic surgeries. I desperately wanted to avoid the ER again; a CT scan for appendicitis also revealed a likely endometrioma…

  • Wilfredo Reyes

    Dr. Seckin literally gave my wife her life back. I am eternally grateful to him for his generous, determined spirit to see that Melanie finally live free from the prison bonds of Endometriosis.

  • Carla

    I am so grateful to Dr Seckin and Dr. Goldstein. My experience was nothing short of amazing. I was misdiagnosed with the location of my fibroids and have had a history of endometriosis. Dr. Seckin was the one who accurately diagnosed me. Dr Seckin and Dr. Goldstein really care about their patients and it shows. They listened to my concerns,…

  • Melissa Boudreau

    When I think of Dr. Seckin these are the words that come to mind. Gratitude, grateful, life-changing, a heart of gold. I feel compelled to give you a bit of background so you can understand the significance of this surgery for me. I am passionate about Endometriosis because it has affected me most of my life and I have a…

  • Jaclyn Harte

    Dr. Seckin and Dr. Goldstein radically changed my quality of life. They treat their patients with dignity & respect that I've personally never seen in the literally 25+ doctors I've seen for endometriosis. This summer, I had a surgery with Dr. Seckin & Goldstein. It was my first with them, but my 5th endo surgery. I couldn't believe the difference,…

  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…